By James A. Fussell
The Kansas City Star
KANSAS CITY, Mo. — There’s nothing funny about autism.
Wait a minute. Yes there is — especially when Chris Long tells the “boob” story.
But let’s back up.
Last month several Kansas City, Mo., area parents — coached by local comics — practiced routines about the humorous side of living with autistic kids. They were preparing to take the stage for real at the Mission Theatre for the all-in-fun, over-21 autism fundraiser “An Evening With the ’Rents,” (short for parents). The show benefits Camp Encourage, a local summer program for autistic kids.
As music played, Long walked to the microphone in a lime-green hoodie. She told a story about visiting McDonald’s with her husband, Scott, and their 11-year-old autistic son, Dakota. While Dakota doesn’t talk, Long explained, he does love to rub people’s skin.
“He’ll rub your arms or your back,” she said. “Any warm skin. He just loves it. So we’re at McDonald’s (Play Place) and he’s doing great. But pretty soon he starts rubbing this lady’s arm, and she’s turning redder and redder.
“It’s summertime, and she’s got this huge chest, and a very low-cut top. And he just reaches in and grabs this woman’s boob. And he just starts rub-bin’, and I don’t know what to do. I’m like, ‘Scott?’ And he’s like, ‘What? You want me to go grab the other one?’”
The dozen or so people in the room exploded with laughter. A smiling Long took it all in.
“Note to self,” she seemed to be thinking. “The boob joke kills!”
Except it was more than just a joke. It’s was one of the many frustrating, and often humorous, realities parents have to deal with when living with a child “on the spectrum.”
Autism — known as a spectrum disorder — affects 1 in 88 people, and 1 in 54 boys. No two cases are exactly alike.
“People with autism just process the world a little differently,” said Keenan Stump, a therapist who works with autistic kids in their homes.
The disorder often impairs judgment over what’s socially acceptable.
Stump, 37, an adjunct professor at Rockhurst University, got the idea for the comedy night after hearing parents share funny stories at another fundraiser.
“By the end of the night my wife and I were in tears,” he said. “It’s absolutely cathartic.”
He persuaded a handful parents of autistic children to overcome their stage fright, and then got local comedians to help focus their material and hone their delivery.
“How many fundraisers do you go to that are a walk?” he said. “I don’t have anything against those, but it could be a lot more fun when people are swearing and drinking booze.”
You know you’re an autism parent when …
The show’s headliner will be Lou Melgarejo, a Chicago blogger who won the 2011 “Speak Out” award from Autism Speaks, a national advocacy and awareness group. The yearly award honors those who go above and beyond in promoting the organization.
At rehearsal, as the next parent waited her turn, Stump grabbed the mike.
“All you have to worry about tonight, really, is just getting a feel for being up here, walk around, test it out, grab the microphone, pace if you want. There are lights on, and people will be staring.”
“I’m really nervous right now,” said Olivia Cytrynowicz, a Hallmark greeting card editor whose 4-year-old, Otto, is autistic. “I’ve coined a little phrase for how I feel. It’s called pee-vomit. I could pee my pants or puke right now.
“But I figure this is the crowd I could probably do that in front of and it wouldn’t be too shocking, right?” (Some autistic children have gastrointestinal issues, and many have problems learning to relieve themselves appropriately, parents said.)
“OK. A little bit about myself. I grew up with a nonverbal autistic brother. His name is Roger. In a time when people really didn’t know what autism was I’d say, ‘Don’t make fun of him. He’s autistic.’ And they’d say, ‘Artistic?’ No. No. No. Autistic. So now, being a mother of a 4-year-old son with autism, it is so gratifying to live in a time when people know what autism is, and we can get together and support each other in a night of love and laughter.”
“Here here!” someone shouted. “Yeah!”
“You know you’re an autism parent when you own cleaning products with names like Urine Destroyer,” she said. “It really works. I should know because my couch is coated in it.”
“You know you’re an autism parent when the school calls to let you know that your autistic child pushed another child over a toy, and you’re so flippin’ excited that your kid initiated play with the other kid, you almost forget to ask if the other kid’s OK.”
After many laughs, she ended on a tender note.
“You know you’re an autism parent when it takes a lot to shock you or surprise you or freak you out. But it takes very little, like appropriate eye contact, an initiated conversation or an ‘I love you, Mom’ to melt your heart.”
Stump can hardly believe the improvement.
“To see these parents transform into comedians, instead of just a mom telling a story, is mind-blowing,” he said. “The delivery, the timing, the little gestures. It’s like they’ve been doing it their whole lives.”
A ‘gift’ for the community
After parents performed, each consulted with a mentor — local comics Brady Goodman and Steve Moser (a finalist on “Last Comic Standing”), who also will host the show.
“The area where I can (offer) the most help is a tiny bit of writing, stage awareness and mobility and what to do with the mic,” Goodman said. “They have so much material. I’m just trying to get them to a place where they’re comfortable.”
He knows they’re scared.
“It’s one thing to get up there and tell knock-knock jokes,” he said. “It’s quite another to share intimate family experiences and risk judgment. I give them so much credit.”
How will they do on show night?
“It’s possible we witness a microphone train wreck,” he said. “We’re living on the edge here, and that’s what makes this so exciting. I just want them to know it’s not all about one-liners. Tell your story, and people will laugh along the way. Anyway you look at it, these parents are just giving such a gift to their community.”
Jennifer Smith, the executive director of Autism Society — The Heartland, knows how much that means.
“I get daily calls from families, and I hear the desperation in their voices,” she said. “There is such a sadness when a family member is diagnosed. But there’s another side that doesn’t get shared. There are so many things that we laugh about. It’s not that we are making fun of our children. You have to have humor to survive.”
And, on cue.
“Take my (autistic) son,” she said, switching to comedian mode. “On Sunday he was running. And how many times have I said, ‘Don’t run in your socks! You’re going to fall’? And sure enough he hit the linoleum and — boom! Then he yelled, ‘My butt! My butt!’ And he’s a big boy. Six feet tall. And I’m trying not to laugh, but it’s hard. You just look at all these situations, and you can either cry or laugh. And I choose to laugh.”